Scary... what do you think of this study on charge!!

[Guest guest]

Hmmmm. I just dropped in to catch up and read this first. My oh my.

used to work on the farms in CT. At first he worked tobacco around age 15 and

then corn and potato fields. He did that every summer till we married. And

I mean BIG farms.

Got me thinking.

Bonnie

[Guest guest]

Hi guys

in my last lecture today we were handed some notes so I decided to read it

on the bus home, i nearly collapsed!!

apparently Great Ormond Street top London Hospital are currently study the

links between Charge syndrome and Organophosphate Pesticides, after studies

of cattle's offspring and links with high abnormalities.

Its a health professional guide to preconception care. by Forsight, apart

from all the norms folic acid dont do this and that, no5 had CHARGE

SYNDROME in it now no one i ever meet in the professional world has usually

heard of charge!!

I dont buy organic its too expensive, wish I did now!!!!!!

Has anyone heard of this before or do you know of any other teams doing

studies in this field.

[Guest guest]

Interesting Les. Found this online:

http://foresight-preconception.org.uk/booklet_healthproguide.htm

Lis

>

> Hi guys

>

> in my last lecture today we were handed some notes so I decided to read it

> on the bus home, i nearly collapsed!!

>

> apparently Great Ormond Street top London Hospital are currently study the

> links between Charge syndrome and Organophosphate Pesticides, after

> studies

> of cattle's offspring and links with high abnormalities.

>

> Its a health professional guide to preconception care. by Forsight, apart

> from all the norms folic acid dont do this and that, no5 had CHARGE

> SYNDROME in it now no one i ever meet in the professional world has

> usually

> heard of charge!!

>

> I dont buy organic its too expensive, wish I did now!!!!!!

>

> Has anyone heard of this before or do you know of any other teams doing

> studies in this field.

>

>

[Guest guest]

Les,

This is astounding. I have often suspected an environmental link to CHARGE,

but so far the actual publicized information is limited related specifically

to CHARGE. There is information about environmental associations with other

kinds of birth conditions. My suspicion of possible environmental links is

one of the main reasons behind many of the posts I make. But again, I do

not know of any official perspective that backs this up specifically for

CHARGE. That possible connections are being studied is very interesting to

me.

It is my opinion, and admittedly, this is a very personal one that is not

corroborated by research, that environmental factors may be somehow

associated with the activation of the gene associated with CHARGE.

Wow, girl. You are better than my cup of coffee for waking me up this

morning. You have my attention.

Scary... what do you think of this study on charge!!

> Hi guys

>

> in my last lecture today we were handed some notes so I decided to read it

> on the bus home, i nearly collapsed!!

>

> apparently Great Ormond Street top London Hospital are currently study the

> links between Charge syndrome and Organophosphate Pesticides, after

> studies

> of cattle's offspring and links with high abnormalities.

>

> Its a health professional guide to preconception care. by Forsight, apart

> from all the norms folic acid dont do this and that, no5 had CHARGE

> SYNDROME in it now no one i ever meet in the professional world has

> usually

> heard of charge!!

>

> I dont buy organic its too expensive, wish I did now!!!!!!

>

> Has anyone heard of this before or do you know of any other teams doing

> studies in this field.

>

>

>

[Guest guest]

OMG your brill, thats it, thats what they handed out, I could do with

you here when I need to research my homeworks, you put me to shame!!

Well I would be interested to see how many mums ate ORGANIC food when

pregnant and how many didnt?????

hugs Les x

>

> Interesting Les. Found this online:

> http://foresight-preconception.org.uk/booklet_healthproguide.htm

> Lis

> On 10/9/06, Amelie Chan

<amelie.m.chan@...<amelie.m.chan%40googlemail.com>>

> wrote:

> >

> > Hi guys

> >

> > in my last lecture today we were handed some notes so I decided to read

> it

> > on the bus home, i nearly collapsed!!

> >

> > apparently Great Ormond Street top London Hospital are currently study

> the

> > links between Charge syndrome and Organophosphate Pesticides, after

> > studies

> > of cattle's offspring and links with high abnormalities.

> >

> > Its a health professional guide to preconception care. by Forsight,

> apart

> > from all the norms folic acid dont do this and that, no5 had CHARGE

> > SYNDROME in it now no one i ever meet in the professional world has

> > usually

> > heard of charge!!

> >

> > I dont buy organic its too expensive, wish I did now!!!!!!

> >

> > Has anyone heard of this before or do you know of any other teams doing

> > studies in this field.

> >

> >

[Guest guest]

, I've always wondered too, particularly because Graeme is a farmer who

uses herbicides/pesticides, etc. That didn't explain it for the rest of the

population, but if it's in the soil, foods, etc that everyone eats, it might

help explain why many people from many backgrounds have the gene mutation.

>

> Les,

>

> This is astounding. I have often suspected an environmental link to

> CHARGE,

> but so far the actual publicized information is limited related

> specifically

> to CHARGE. There is information about environmental associations with

> other

> kinds of birth conditions. My suspicion of possible environmental links is

>

> one of the main reasons behind many of the posts I make. But again, I do

> not know of any official perspective that backs this up specifically for

> CHARGE. That possible connections are being studied is very interesting to

>

> me.

>

> It is my opinion, and admittedly, this is a very personal one that is not

> corroborated by research, that environmental factors may be somehow

> associated with the activation of the gene associated with CHARGE.

>

> Wow, girl. You are better than my cup of coffee for waking me up this

> morning. You have my attention.

>

>

> Scary... what do you think of this study on charge!!

>

> > Hi guys

> >

> > in my last lecture today we were handed some notes so I decided to read

> it

> > on the bus home, i nearly collapsed!!

> >

> > apparently Great Ormond Street top London Hospital are currently study

> the

> > links between Charge syndrome and Organophosphate Pesticides, after

> > studies

> > of cattle's offspring and links with high abnormalities.

> >

> > Its a health professional guide to preconception care. by Forsight,

> apart

> > from all the norms folic acid dont do this and that, no5 had CHARGE

> > SYNDROME in it now no one i ever meet in the professional world has

> > usually

> > heard of charge!!

> >

> > I dont buy organic its too expensive, wish I did now!!!!!!

> >

> > Has anyone heard of this before or do you know of any other teams doing

> > studies in this field.

> >

> >

> >

[Guest guest]

Les, I think it occurs back in the sperm, so it wouldn't matter what you ate

while pregnant. From what I've read, I think it interferes more with male

reproduction, not women's.

If we lived closer, I would love to help you with your homework!

>

> OMG your brill, thats it, thats what they handed out, I could do

> with

> you here when I need to research my homeworks, you put me to shame!!

> Well I would be interested to see how many mums ate ORGANIC food when

> pregnant and how many didnt?????

> hugs Les x

>

> On 09/10/06, Weir <kawfolks@... <kawfolks%40gmail.com>> wrote:

> >

> > Interesting Les. Found this online:

> > http://foresight-preconception.org.uk/booklet_healthproguide.htm

> > Lis

> > On 10/9/06, Amelie Chan

<amelie.m.chan@...<amelie.m.chan%40googlemail.com>

> <amelie.m.chan%40googlemail.com>>

> > wrote:

> > >

> > > Hi guys

> > >

> > > in my last lecture today we were handed some notes so I decided to

> read

> > it

> > > on the bus home, i nearly collapsed!!

> > >

> > > apparently Great Ormond Street top London Hospital are currently study

> > the

> > > links between Charge syndrome and Organophosphate Pesticides, after

> > > studies

> > > of cattle's offspring and links with high abnormalities.

> > >

> > > Its a health professional guide to preconception care. by Forsight,

> > apart

> > > from all the norms folic acid dont do this and that, no5 had CHARGE

> > > SYNDROME in it now no one i ever meet in the professional world has

> > > usually

> > > heard of charge!!

> > >

> > > I dont buy organic its too expensive, wish I did now!!!!!!

> > >

> > > Has anyone heard of this before or do you know of any other teams

> doing

> > > studies in this field.

> > >

> > >

[Guest guest]

this sent shivers down my spine I forgot about Graeme's occupation, i

feel better with the post about the sperm THANK YOU would probably

persecuted myself for the rest of my life!!!! although Darren worked as a

railway engineer, he does do all our shopping and cooking, so maybe he has

been exposed during preparation over the years, this has really got me

thinking!!!

hugs Les x

>

> , I've always wondered too, particularly because Graeme is a farmer

> who

> uses herbicides/pesticides, etc. That didn't explain it for the rest of

> the

> population, but if it's in the soil, foods, etc that everyone eats, it

> might

> help explain why many people from many backgrounds have the gene mutation.

>

>

> On 10/9/06, Keedy <wkeedy@... <wkeedy%40earthlink.net>>

> wrote:

> >

> > Les,

> >

> > This is astounding. I have often suspected an environmental link to

> > CHARGE,

> > but so far the actual publicized information is limited related

> > specifically

> > to CHARGE. There is information about environmental associations with

> > other

> > kinds of birth conditions. My suspicion of possible environmental links

> is

> >

> > one of the main reasons behind many of the posts I make. But again, I do

> > not know of any official perspective that backs this up specifically for

> > CHARGE. That possible connections are being studied is very interesting

> to

> >

> > me.

> >

> > It is my opinion, and admittedly, this is a very personal one that is

> not

> > corroborated by research, that environmental factors may be somehow

> > associated with the activation of the gene associated with CHARGE.

> >

> > Wow, girl. You are better than my cup of coffee for waking me up this

> > morning. You have my attention.

> >

> >

> > Scary... what do you think of this study on charge!!

> >

> > > Hi guys

> > >

> > > in my last lecture today we were handed some notes so I decided to

> read

> > it

> > > on the bus home, i nearly collapsed!!

> > >

> > > apparently Great Ormond Street top London Hospital are currently study

> > the

> > > links between Charge syndrome and Organophosphate Pesticides, after

> > > studies

> > > of cattle's offspring and links with high abnormalities.

> > >

> > > Its a health professional guide to preconception care. by Forsight,

> > apart

> > > from all the norms folic acid dont do this and that, no5 had CHARGE

> > > SYNDROME in it now no one i ever meet in the professional world has

> > > usually

> > > heard of charge!!

> > >

> > > I dont buy organic its too expensive, wish I did now!!!!!!

> > >

> > > Has anyone heard of this before or do you know of any other teams

> doing

> > > studies in this field.

> > >

> > >

> > >

[Guest guest]

Ok - that is scary. I also believe that all of the additives, pesticides,

and chemicals in our environment, food, work places, etc must have an impact

on us all. But how do you avoid it? It's literally everywhere!

My husband is a smoker and works with explosives - which are made using

fertilizer. Not pesticides - but chemicals for sure. He eats crap most of

the time - Mountain Dew, candy bars, etc. Not that my eating habits were

any better before Aubrie. I've only improved them since she was born. So

who knows. It's disturbing to think that we may inadvertently have caused

this. We don't have real vices, don't do drugs, we live a reasonable

lifestyle - not one that you would think would cause problems.

Imaging a life free of chemical influences is impossible. I try to avoid

what I can - within reason - but I know I could be doing more. How much

effort do we put into it when we don't know if the small part we're able to

impact will be of any help? Makes you want to buy an island, create your

own self-sufficient utopia, and leave the rest of the world. But - the

chemicals would find you through the rain and the waves. Ah well. just

venting.

Michele W

[Guest guest]

This is something I suspected for a while but was told it wasn't likely. Cant

remember who told me that... But anyhow, my dad used to spray our fruit trees in

the backyard as well as he used to spray one particular tree to kill all the

caterpillars. He also worked at an aluminum mine for a brief time when he first

immigrated to Canada. Not that same as farming, but I am certain he was exposed

to quite a few chemicals.

CHARGE Adult

Re: Scary... what do you think of this study on charge!!

Hmmmm. I just dropped in to catch up and read this first. My oh my.

used to work on the farms in CT. At first he worked tobacco around age 15 and

then corn and potato fields. He did that every summer till we married. And

I mean BIG farms.

Got me thinking.

Bonnie

[Guest guest]

I used to help my dad farm--anything he did I did--except run the combine--long

story--let's jsut say cleaning out a packed up combine @110 degrees in the sun

for several hours isn't fun!! I was around all kinds of chemicals.

Re: Scary... what do you think of this study on charge!!

Hmmmm. I just dropped in to catch up and read this first. My oh my.

used to work on the farms in CT. At first he worked tobacco around age 15 and

then corn and potato fields. He did that every summer till we married. And

I mean BIG farms.

Got me thinking.

Bonnie

[Guest guest]

My parents grew up and I was born in a huge farming community. Lots of

pestiside use plus there is an oil refinery not to far from the city I was

born. (makes my birth city smell like buttered popcorn in the fall)

Chantelle

--

My spelling's kinda wobbly. It's good spelling but the letters wobble and

end up in the wrong places. - Winnie the Pooh

My Blog Space: http://neutralufo.blogspot.com/

[Guest guest]

OMG, this is getting very interesting, Darren has worked previous to the

railway for 20 years as a plasterer and stone mason, he said this evening

that he has worked with chemicals for ex: lime stone and many others, but I

dont think pesticides, although hes not sure what was in things like PVA

bonding agent (glue,) as such the only chemicals I have come into contact

with are mercury and alloy used in amalgam (metal fillings).

I know we cant change whats happened to us, but can you imagine finding a

chemical link to stop this happening to new parents!!!

How can I follow the hospital in Londons study???? if I rang them to explain

I have a charge child do you think they might speak to me???? does anyone

know how we could get involved with this research and study going on?????

hugs Les

>

> I used to help my dad farm--anything he did I did--except run the

> combine--long story--let's jsut say cleaning out a packed up combine @110

> degrees in the sun for several hours isn't fun!! I was around all kinds of

> chemicals.

>

>

> Re: Scary... what do you think of this study on charge!!

>

> Hmmmm. I just dropped in to catch up and read this first. My oh my.

> used to work on the farms in CT. At first he worked tobacco around age 15

> and

> then corn and potato fields. He did that every summer till we married. And

>

> I mean BIG farms.

>

> Got me thinking.

>

> Bonnie

>

>

[Guest guest]

Hi Les ( & everyone)

I will forward this link to Kirk. Not sure what he will make of it

but given that he is ex GOS he should be able to find out who is carrying

out the research.

What is my exposure to organophosphates? I am effectively am an office

worker and live in a city. Foodwise for years before Jess was born I had

been eating organic food. I don't fit into any of the job categories other

father's mentioned are in.

Why does there have to be a reason for the genetic mutation?

Simon

>

>

[Guest guest]

Simon

Thanks for passing this to , probably is a case of clutching at

straws!!

*Why does there need to be reason for the genetic mutation??*

Simon I cant speak for anyone else only myself, I persecute myself every day

at some point for wondering why Amelie has to endure what she goes through,

and then I look at my three healthy girls, I blame myself no matter how many

times someone tries to reassure me its not my fault, I search for clues

regarding my pregnancy or at least try to find some answers, to try and ease

my pain of carrying and giving birth to Amelie and feeling responsible for

all shes been through. I guess as a mother when giving birth and they tell

you your child is disabled its the thought of what did you do wrong during

your pregnancy, I know Darren feels my anxieties and pain too, its almost

like there's no rest until you find out why!!

No it will not change anything, its just a motherly instinct something deep

inside I know I will never fully recover from, thats the best way I can put

into words how it feels for me!

Les x

love to Flo and the girls xxx

>

> Hi Les ( & everyone)

>

> I will forward this link to Kirk. Not sure what he will make of it

> but given that he is ex GOS he should be able to find out who is carrying

> out the research.

>

> What is my exposure to organophosphates? I am effectively am an office

> worker and live in a city. Foodwise for years before Jess was born I had

> been eating organic food. I don't fit into any of the job categories other

> father's mentioned are in.

>

> Why does there have to be a reason for the genetic mutation?

>

> Simon

>

> >

> >

>

>

[Guest guest]

Simon-

Good point. There likely is no one reason for it. We can find things that

we all have in common because most of us live typical 21st century lives. I

don't think we'll ever find one exact cause. And I don't know that that is

where we need to spend our energy. But it is interesting to look at the

impact of all chemical exposure in our lives and figure out how to minimize

them.

I'm curious to know where the idea came from that CHARGE seemed at all to be

caused by anything. Whenever this comes up, Meg is adamant that there is no

apparent cause. I'm anxious to see her response to this discussion. Was

there really a valid study that found this? If so, why haven't we heard

about it before it showed up in this document?

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

simon howard

Sent: Monday, October 09, 2006 5:15 PM

To: CHARGE

Subject: Re: Scary... what do you think of this study on charge!!

Hi Les ( & everyone)

I will forward this link to Kirk. Not sure what he will make of it

but given that he is ex GOS he should be able to find out who is carrying

out the research.

What is my exposure to organophosphates? I am effectively am an office

worker and live in a city. Foodwise for years before Jess was born I had

been eating organic food. I don't fit into any of the job categories other

father's mentioned are in.

Why does there have to be a reason for the genetic mutation?

Simon

[Guest guest]

Les-

I also spent some time feeling incredible guilt for creating a less than

perfect child. I felt that my husband should no longer love me, my friends

should no longer value me, because I'd done a horrible job. What helped me

was meeting all the fabulous families at my first CHARGE conference. When I

saw all of those wonderful people and families, I realized how guilty and

worthless I'd been feeling. And I realized that I was ok. In fact, I was

proud to be in their " club " . If they could get on with life and be

wonderful, capable people that anyone would enjoy knowing, then I could go

on too. And all of Meg's admonitions over the years that we did nothing to

cause it have helped to. I really believe it's nothing we could have

avoided. If they do find a cause at some point, it will be something that

was, and probably will remain, out of our hands - some combination of

environmental factors that we couldn't have avoided. I hope you find some

peace of mind. The guilt is not a good thing to carry inside you. There's

enough guilt around not doing all the right things, are the decisions we're

making the right ones, etc. No room for old unwarranted guilt.

Hugs-

Michele W

[Guest guest]

Hey Simon, I think for me, it's just a curiousity factor and also if there's

someway that something can be done to prevent it in the future. THat would

be interesting to me. I think genetics is fascinating. If I were more

scientifically inclined, I would be studying that, not doing my education

degree.

>

> Hi Les ( & everyone)

>

> I will forward this link to Kirk. Not sure what he will make of it

> but given that he is ex GOS he should be able to find out who is carrying

> out the research.

>

> What is my exposure to organophosphates? I am effectively am an office

> worker and live in a city. Foodwise for years before Jess was born I had

> been eating organic food. I don't fit into any of the job categories other

> father's mentioned are in.

>

> Why does there have to be a reason for the genetic mutation?

>

> Simon

>

> >

> >

>

>

[Guest guest]

To add to what has been said on the subject, to me it is also possible that

knowing that if there was a particular toxin involved in leading somehow to

CHARGE, that perhaps there could be ways to affect the health of some

children who suffer significant health issues.

For example, let's imagine that a hypothetical xyz chemical was somehow

linked to the occurance of CHARGE. Of course we don't know this at all, as

this article Les brought up and which found more information on, is one

of the first bits of information that we have all discussed about a

possible, actual causative agent in addition to the gene. But, let's say we

knew there was a correlation of this xyz chemical with CHARGE. And let's

say we knew that the xyz chemical affected the immune system. Then, while

the CHARGE arrests in development have already occured, such as heart

conditions or clefts, there could still be ways to focus on improving the

immune system of some children with CHARGE if knowledge could be found

relating to effects of the particular chemical.

What I just mentioned, was a hypothetical situation to illustrate one of the

reasons I feel it is important to pursue knowledgte on the possible

connections of pesticides or whatever toxins to CHARGE. Apparently at least

one such study is being conducted presently.

I know that others may feel guilt if there would be a realization that some

actual circumstance led to the occurance of CHARGE. To me, that is not an

issue I think about because I know how careful I was during the pregnancy

and before the pregnancy. I was into my 30's and considered myself an older

mother at the time. And with all three of my pregnancies I have been very

careful, just as all of us have been, I am very sure. There was nothing

known at the time our kids were conceived that would have allowed us to

avoid some possible trigger, if there is one. As Michele says, chemicals

and toxins are everywhere.

To me, the pursuit of knowledge can be an end in and of itself. We don't

always know what the outcome of study will be. For example, when people set

out to explore the world centuries ago, there were people who felt there was

no need to know more than what existed in their particular locale, town, or

country. But others were drawn to the excitement of understanding the

unknown. It was not known at the time what the effects of such explorations

would be. Most of us would agree that knowing more about the geography,

social structures, and cultures of the world is of extreme value.

It is the same to me to applaud those who are looking into possible

environmental associations with CHARGE. If there are no connections at all,

so much the better. If there are connections, perhaps it would be

beneficial knowledge in perhaps as yet unknown ways.

My husband is a scientist who says that you never really know the outcome of

experiments or research until you have the data. To me, since there

obviously are some people who are considering a chemical link, that that

option needs to be explored until it is understood to be true, or understood

to be be discounted.

I like to think about possible approaches and perspectives to different

questions in the world. I know that others may not operate in that

particular way. I think, as often says, it is all good. That's what

makes the world go round. Different approaches, different interests,

different viewpoints lead us to have a very interesting world.

Re: Scary... what do you think of this study on charge!!

> Hey Simon, I think for me, it's just a curiousity factor and also if

> there's

> someway that something can be done to prevent it in the future. THat would

> be interesting to me. I think genetics is fascinating. If I were more

> scientifically inclined, I would be studying that, not doing my education

> degree.

>

>

>

>

>>

>> Hi Les ( & everyone)

>>

>> I will forward this link to Kirk. Not sure what he will make of it

>> but given that he is ex GOS he should be able to find out who is carrying

>> out the research.

>>

>> What is my exposure to organophosphates? I am effectively am an office

>> worker and live in a city. Foodwise for years before Jess was born I had

>> been eating organic food. I don't fit into any of the job categories

>> other

>> father's mentioned are in.

>>

>> Why does there have to be a reason for the genetic mutation?

>>

>> Simon

>>

>> >

>> >

>>

>>

[Guest guest]

wow les this is interesting especialy since you acutaly take into account

that my dads family r all farmers from the country but let me say this ive

had friends from hosp who have been from the country and their dads have

done the same kinda stuff as my dad did as a boy so my question is how come

people like clare dotn get this but she gets cf and i get charge very

puzzling thanks lez LOL

>

> To add to what has been said on the subject, to me it is also possible

> that

> knowing that if there was a particular toxin involved in leading somehow

> to

> CHARGE, that perhaps there could be ways to affect the health of some

> children who suffer significant health issues.

>

> For example, let's imagine that a hypothetical xyz chemical was somehow

> linked to the occurance of CHARGE. Of course we don't know this at all, as

>

> this article Les brought up and which found more information on, is

> one

> of the first bits of information that we have all discussed about a

> possible, actual causative agent in addition to the gene. But, let's say

> we

> knew there was a correlation of this xyz chemical with CHARGE. And let's

> say we knew that the xyz chemical affected the immune system. Then, while

> the CHARGE arrests in development have already occured, such as heart

> conditions or clefts, there could still be ways to focus on improving the

> immune system of some children with CHARGE if knowledge could be found

> relating to effects of the particular chemical.

>

> What I just mentioned, was a hypothetical situation to illustrate one of

> the

> reasons I feel it is important to pursue knowledgte on the possible

> connections of pesticides or whatever toxins to CHARGE. Apparently at

> least

> one such study is being conducted presently.

>

> I know that others may feel guilt if there would be a realization that

> some

> actual circumstance led to the occurance of CHARGE. To me, that is not an

> issue I think about because I know how careful I was during the pregnancy

> and before the pregnancy. I was into my 30's and considered myself an

> older

> mother at the time. And with all three of my pregnancies I have been very

> careful, just as all of us have been, I am very sure. There was nothing

> known at the time our kids were conceived that would have allowed us to

> avoid some possible trigger, if there is one. As Michele says, chemicals

> and toxins are everywhere.

>

> To me, the pursuit of knowledge can be an end in and of itself. We don't

> always know what the outcome of study will be. For example, when people

> set

> out to explore the world centuries ago, there were people who felt there

> was

> no need to know more than what existed in their particular locale, town,

> or

> country. But others were drawn to the excitement of understanding the

> unknown. It was not known at the time what the effects of such

> explorations

> would be. Most of us would agree that knowing more about the geography,

> social structures, and cultures of the world is of extreme value.

>

> It is the same to me to applaud those who are looking into possible

> environmental associations with CHARGE. If there are no connections at

> all,

> so much the better. If there are connections, perhaps it would be

> beneficial knowledge in perhaps as yet unknown ways.

>

> My husband is a scientist who says that you never really know the outcome

> of

> experiments or research until you have the data. To me, since there

> obviously are some people who are considering a chemical link, that that

> option needs to be explored until it is understood to be true, or

> understood

> to be be discounted.

>

> I like to think about possible approaches and perspectives to different

> questions in the world. I know that others may not operate in that

> particular way. I think, as often says, it is all good. That's what

> makes the world go round. Different approaches, different interests,

> different viewpoints lead us to have a very interesting world.

>

>

> Re: Scary... what do you think of this study on charge!!

>

> > Hey Simon, I think for me, it's just a curiousity factor and also if

> > there's

> > someway that something can be done to prevent it in the future. THat

> would

> > be interesting to me. I think genetics is fascinating. If I were more

> > scientifically inclined, I would be studying that, not doing my

> education

> > degree.

> >

> >

> >

> > On 10/9/06, simon howard

<simonthoward@...<simonthoward%40googlemail.com>>

> wrote:

> >>

> >> Hi Les ( & everyone)

> >>

> >> I will forward this link to Kirk. Not sure what he will make of

> it

> >> but given that he is ex GOS he should be able to find out who is

> carrying

> >> out the research.

> >>

> >> What is my exposure to organophosphates? I am effectively am an office

> >> worker and live in a city. Foodwise for years before Jess was born I

> had

> >> been eating organic food. I don't fit into any of the job categories

> >> other

> >> father's mentioned are in.

> >>

> >> Why does there have to be a reason for the genetic mutation?

> >>

> >> Simon

> >>

> >> >

> >> >

> >>

> >>

[Guest guest]

Thanks michele, and I do take all this on board, I just feel sad when Amelie

is having bad times which has been a 14 month nightmare!! and that maybe and

hopefully now she can start to enjoy her life more and maybe I can start to

enjoy her life too, buts its so hard to relax early on when they tell me

things like shes fragile, its scary, her lungs scare me, maybe now its our

time to have some fun, and my anxieties about my pregnancy can fade into the

insignificant...I hope so

thanks again for your words of encouragement hugs Les x

>

> Les-

>

> I also spent some time feeling incredible guilt for creating a less than

> perfect child. I felt that my husband should no longer love me, my friends

> should no longer value me, because I'd done a horrible job. What helped me

> was meeting all the fabulous families at my first CHARGE conference. When

> I

> saw all of those wonderful people and families, I realized how guilty and

> worthless I'd been feeling. And I realized that I was ok. In fact, I was

> proud to be in their " club " . If they could get on with life and be

> wonderful, capable people that anyone would enjoy knowing, then I could go

> on too. And all of Meg's admonitions over the years that we did nothing to

> cause it have helped to. I really believe it's nothing we could have

> avoided. If they do find a cause at some point, it will be something that

> was, and probably will remain, out of our hands - some combination of

> environmental factors that we couldn't have avoided. I hope you find some

> peace of mind. The guilt is not a good thing to carry inside you. There's

> enough guilt around not doing all the right things, are the decisions

> we're

> making the right ones, etc. No room for old unwarranted guilt.

>

> Hugs-

> Michele W

>

>

[Guest guest]

After my son ph was born, the genetics clinic at Riley Children's

Hospital had me fill out a long questionnaire on family history. While that

showed

nothing remarkable, they were interested in the fact that my son's father had

been exposed to Agent Orange in Vietnam. I have always wondered about that

link, even though the government would never admit that it could have been a

cause.

- mom to ph - 24 yr. old cHaRGE'r

[Guest guest]

Fortunately, each and every one of us is equally qualified to be the

recipient of a spark of wisdom. The structure of DNA, after all, was gleaned

from an

inspired dream, not a test tube. I am sure that as one possible conclusion

is hypothesized, someone else will come along and while standing on that

knowledge, will reach another conclusion, and yet another, etc. As we live in

an

ever expanding universe, how could thoughts or 'conclusions' be any other

way. No matter how hard we chase the edges, the definitive, the finite; it, by

its nature, will always elude us. All knowledge and understanding should be

accompanied by a qualifying statement, such as " this is our best

interpretation at the moment. " (I forget, are butter and eggs good or bad

today.)

Can you foresee a study that quantifies the memory contained in DNA? Or that

can successfully isolate the 1% that makes us human and not monkey? Monkeys

learned how to use tools. Humans dream dreams and bring them into existence.

We create as we go along; at the very deepest levels. The proof is

physically in the quark, and in the lepton; and consciously in 'divine'

inspiration.

How do we know that CHARGE is not just a genetic adaptation-a test case-as

evolution attempts to address a future world situation far removed from the

conditions we live in now? Genetics looks backwards at the situation, because

that's all it can do-not because that's all there is.

Whether or not there is any ultimate value in the current analyses on

CHARGE, who better to be interested, what audience would be more appropriate,

than

us.

Underlying worry states, a natural response to the unpredictable expression

of CHARGE, particularly in the early vulnerable years, preceded the report.

The report became a vehicle of its expression, not the perpetrator. None of us

are disqualified from successful discrimination when its time comes.

in Ma. (, 21 yrs)

[Guest guest]

Michele,

I spoke with a mom in Australia who said that when met

with her he said " Welcome to the club " and gave her a CHARGE mug and

hat. Folks, please don't get so concerned about people doing a study.

Because someone is investigating something does not mean that there is a

link. We are all exposed to chemicals. I did email with Conny about it,

and she does not believe there is any reason to suspect the CHD7 gene is

particularly susceptible to chemicals. There is always the possibility

that there is something very similar to CHARGE that is. But for now, I

see no reason at all to anticipate a link.

Tim

S. Hartshorne, Ph.D.

Professor of Psychology

Central Michigan University

Mount Pleasant, MI 48859

phone

fax

tim.hartshorne@...

[Guest guest]

I don't think it's something I'm concerned about by any means, but I am

always interested in investigating possibilities and figuring things out.

http://www.chargesyndrome.info

>

> Michele,

>

> I spoke with a mom in Australia who said that when met

> with her he said " Welcome to the club " and gave her a CHARGE mug and

> hat. Folks, please don't get so concerned about people doing a study.

> Because someone is investigating something does not mean that there is a

> link. We are all exposed to chemicals. I did email with Conny about it,

> and she does not believe there is any reason to suspect the CHD7 gene is

> particularly susceptible to chemicals. There is always the possibility

> that there is something very similar to CHARGE that is. But for now, I

> see no reason at all to anticipate a link.

>

> Tim

>

> S. Hartshorne, Ph.D.

>

> Professor of Psychology

>

> Central Michigan University

>

> Mount Pleasant, MI 48859

>

> phone

>

> fax

>

> tim.hartshorne@... <tim.hartshorne%40cmich.edu>

>

>